Many of the people who follow my blog are parents of special needs children who may one day find themselves guests at a Ronald McDonald House (RMH). However, I think it's insightful for all of us to better understand what this home provides to some pretty special children. I will admit - I was familiar with RMH, but never really understood how much a "home" could impact someone facing a difficult medical situation. All of us who eat at McDonald's have seen the extra change tray that benefits the Ronald McDonald House. Never before have I realized how much that money could help families who are going through a very tough time. This post is to share a day in the life of care givers and patients at RMH.
After we arrived in Baltimore Monday we got a call from Ronald McDonald House and they had a room for us after being on the wait list for 4 weeks! Although apprehensive at first since we had a rhythm at the hotel, the move would save a lot of money so it made sense. There are many things about RMH that make a difference in peoples' lives and I want to try to share that with those who will never need to find a place to call home away from home.
The People - who call this work
From the moment we walked in the door we were greeted by such friendly people. Their motto is "The House That Love Built" and that truly does describe it. Both children received a beautiful fleece blanket - Cole's is blue and green and has soccer balls and Reagan's is pink with foxes. They were so nice to have since we hadn't packed blankets. There is an entire staff of people who make RMH possible. Interaction with Ashley started when our referral paperwork was sent over from the hospital by the social worker the Friday before Reagan started treatment. Since there wasn't availability at RMH for us Ashely was instrumental in making sure the hotel we chose from their vendor list was booked at the right RMH rate ($65/night instead of $259). She was also very helpful in working with the hotel to coordinate a monthly parking rate since it was $32 per day. That would have been $640 just in parking and we got that reduced to $250. All the staff was very helpful, always had a smile and really made you feel like they were invested in helping you. This also included the shuttle bus driver (aka Santa Claus) and the maintenance engineer. Bud drove the shuttle for 7 years before his wife became ill and passed away. Now he does odd jobs around the house like hanging flat screens and checking the rooms for problems such as light bulbs and broken towel rods. He's probably almost 80 years old and his kids are moved away, but he likes knowing he can help these kids in some way. During the Freddie Gray riots in Baltimore a mom was driving back from the hospital and her car was surrounded by rioters just 2 blocks from RMH. She called RMH frantic and Bud and Sue called U of Md police and ran down the street to try to help her. Such amazing people.
The People - who call this home
In addition to the staff at the house, there are dozens of people who called this home. We met so many amazing kiddos and their parents, aunts and nurses. We met Lizzy, Gabe, Riley, Maddie, Mia, Maddie (another one). We met 3 children having leg lengthening, 2 with cancer, 1 with a tumor (a 2 year old waiting to find out if her foot would need to be amputated), 1 with Spinabifida back year after year for therapy, 1 with severe neuro behavioral issues, 3 who had bladder reconstruction and had colostomy bags, and 1 quadriplegic. We met 1 friend from Japan, 1 from Korea, two from MN, two from TX, 1 from NY, and 1 from Delaware. Each had a story and each were on a journey with an end that was unknown. Two of the children who were doing leg lengthening were there for 3 months every time they came. Both had been coming for 10 years. There was a short period of time that the doctors thought Reagan had a leg discrepancy so this hit very close to home. Here is a story about a little boy who needed the surgery - you can see the framing system in the picture and read about it in the Kennedy Krieger magazine.
This "home" that we found was truly that - a place all these kids have come to know well. And although people come and go, they feel accepted while they are there. And THAT was what I took away as the biggest benefit of RMH. Three kiddos pushing themselves around in wheel chairs with huge pins sticking out all throughout their legs. No one stared. No one made fun of them. They could talk about it if they wanted, or we could ignore it and play bingo. You would often hear the mom's in the kitchen sharing stories and getting advice as they were preparing food or reading a book while their child was at the hospital or in bed in their room. Sharing stories in a place where jaws don't drop, but understanding prevails. How many times did people at the hotel ask how Reagan broke her arm. She would say, "I have a cast to make my left hand stronger." And the poor kid would get these confused looks. She realized they were confused but didn't really know how to explain it any differently without a label. At RMH, people just say, "Oh, cool" and move on. It truly was so refreshing feeling like you could share your story with people who could relate and didn't immediately feel sorry for you.
Another part of RMH that makes it so successful is the volunteers. We had breakfast and dinner made for us every day. Different local organizations sign up to cook and donate their time and food to prepare a meal for all the patients at RMH. Currently there are 33 rooms, but a new home with 50 rooms is being built and will be finished in 2017. After a long day at work or a full day at home with the kids, what do you do? These volunteers not only cook, but a different group volunteers after dinner hosts crafts and activities. One night was painting, one was Bingo, one was making t-shirts. Honestly this was something Reagan really looked forward to. It gave the kids something to do and have a little relief from an otherwise
sedentary day. It was amazing how much less stressful it was trying to figure out where to go to eat, how much it was going to cost, how we would walk there (or find a parking garage), and of course, how can you continue to afford meals out for 5 weeks….let alone 3 months. I am in awe that there are so many volunteers who give their time to help others in need. And equally impressed by the donations needed to help support a home like this one. I often struggle at Christmas to find a way for my children to help needy families where they FEEL the impact of their donation. We take clothes and toys to the Salvation Army every year and I have them go with me now. I explain how not everyone can afford Christmas. While they are still learning this, I am now thinking it may be fun to volunteer for craft night at RMH. Something where they can see the smiles on the faces of those they are helping….directly. Kids just like them...
The House that was Home
I've included pictures of the house which was renovated in 2001. It looked brand new and had everything we needed. It was cleaner than our hotel! There was a full kitchen stocked with a free section of refrigerated and cabinet food, a bin in the fridge/freezer and two cabinet drawers labeled with your room number for you to keep food. It was also fully stocked with plates, pans, glasses, silverware, cutting boards etc. There was also a playroom, playground, craft area, piano and computer room. They had tons of crafts, art supplies and games. And for the older kids, they had gaming systems, computers, ping pong, air hockey and a pool table. And Reagan's favorite part - a mailbox! Every day Reagan got to go to her mailbox and see what someone left for her. There were often snacks, gift bags, or toys. There was also a filing drawer filled with any toiletries you may need. Given RMH is not in a nice area of town and many of the guests flew in, it was nice to have all the supplies provided. Supplies surely donated so there was no charge. Did I mention the soda machines? They were stocked with $.25 sodas - that's like 1950's pricing! This is another idea I have for my kids - to take gift bags to RMH on their birthday to bring a smile to another child's face. When we checked into our room there was a small stuffed kitty sitting on the table in our room. These were donated for every child by
Lindsey's parents in memory of a little girl who never went home. She loved kitties and this is her way of leaving her legacy by bringing a smile to every child who receives one.
As you can tell, I was absolutely captivated by our experience at the Baltimore RMH. The best way to summarize is that when we were at the hotel it was a jumping off point - a place we would regroup to decide where we were going next. It was not a place to be. Moving to RMH allowed us to just BE and to relax. We didn't have to find somewhere to go. We found our roots at RMH and went to therapy and then came back to find refuge. To find a place to play. To find food. To find friends. To find peace. Almost like a sanctuary from the reality of why we were there. I realize my children are very blessed to be healthy. They were not facing the tough journey that many of these children are facing. And we knew we were going home. But I've been in these parents' shoes. Uncertain of what might come next. Not having answers. Not sure if my child would live or die. It takes a lot to run a place like this - money, time and people with the energy to make it happen. We certainly feel blessed to have been able to stay and while we hope not to return, it's nice to know there are homes like this for the thousands of people who need them every year.
As I prepare the kids for school next week and try to pick out the perfect first day of school outfit and buy their favorite lunch box, I can't stop thinking about all our new friends at RMH who will not be going back to school. Gabe and Lizzy are not thinking about meeting new friends and learning new things, they are struggling to just avoid infection so they can go home. We should all keep in mind how blessed we are. We all have struggles. We all have challenges. But we also have blessings…sometimes we just need to be reminded that life is not about stuff. It's about family. It's about Hope. And it's about being present for those who need us most. And as we each prepare for our tomorrow, I will leave you with a reminder from Day 1: "In my mind, I can do anything."